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October 5, 2010, a tiny 3lb 7oz 15.75 inch long baby was born at full term. We had received the WHS diagnosis while we were pregnant so we were prepared for her birth. As prepared as you can be for the complete unknown. Today Magnolia is 17lb 13oz and is 31 inches tall.

Here is what she has been up to lately.

Magnolia started school. She goes to school Monday through Friday from 1:10 to 4:10. She loves it!

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Magnolia loves being mobile. She butt scoots everywhere and she does it quickly. She can crawl but hates it and refuses to do it! Magnolia can pull herself up to standing and cruise along furniture. She is weak and unsteady, but she can and does cruise often.

Magnolia only squeals and grunts. She has recently started saying a ‘yeah’ for yes. Her receptive language grows everyday. We are working on a variety of forms of communication in hopes of finding something that works for her expressive language.

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Magnolia had a gtube placed at birth. We have used it for continuous night feeds since day 1. However that was the only time we were using the tube. She would take bottles and small amounts of baby food during the day. However her weight was not increasing and she was drastically slowing down with her bottle feeds and oral eating. We decided, with the help of a nutrionalist, to start doing daytime bolus gtube formula feeds. She has gained a lot of weight since then and we are happy. However, her oral feeds, at this point, are almost completely non-existent. She hasn’t taken a bottle in several months. We are thrilled she is gaining weight, however I would like it if she still took something by mouth. Even if it was just for ‘fun’ like ice cream or yogurt. She may decide to start eating again at some point or she may not.

Magnolia had a very busy summer. Her right foot was in serial casts for 12 weeks. Her left foot was in casts for 5 weeks. She had bilateral foot surgery in July. Since then we have been working on getting her leg strength back. She has AFOs which she wears during the day, especially when she is weight baring.

Magnolia continues to amaze us everyday. She has quite a personality. She has a smile for everyone. She is very social and extremely spoiled!

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2 Responses to Magnolia is 3!

  1. Carissa says:

    You forgot… She’s getting more and more beautiful! I so enjoyed meeting her this summer and getting to hold and cuddle her after her surgery. She is such a gem!
    ~Carissa

  2. Letty says:

    Magnolia is a doll! She sounds just like my Nathaniel, except he rolls everywhere and loves to get tangled up in his g-tube cord because he constantly tries to chew on it. The funny thing is that he gets so excited and starts to make tons of noise and gives it away that he has it…that’s when we take it away. He has teeth, but luckily has ONLY chewed a small hole in it once at my older sons football game. I had some paper tape in his med bag and was able to patch is until we got home. Our little ones sure are sneaky!

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